A matter of life, death and assisted dying

After two high-profile court cases reignited the arguments around assisted deaths last week, Observer policy editor Anushka Asthana brought together five of the most outspoken figures in this controversial debate and put to them the most challenging questions raised by these cases. You can also listen to the debate
online

The baroness is one of the country's most respected philosophers and co-author of Easeful Death: Is There a Case for Assisted Dying?.

BARONESS ILORA FINLAY

Ilora is professor of palliative medicine at Cardiff University and chair of the all-party parliamentary group on dying well.

EVAN HARRIS

The Liberal Democrat MP for Oxford West and Abingdon has campaigned for a change in the law to legalise assisted suicide.

DAVID MORRIS

David is chair of Independent Living Alternatives, which promotes the rights of disabled people to live independently. He has spinal muscular atrophy.

DEBBIE PURDY The right-to-die campaigner has multiple sclerosis and took her legal battle to clarify the laws on assisted suicide to the House of Lords (contributing to the debate by telephone).

Anushka Asthana: Baroness Finlay, you have described the current law as having a "stern face and a kind heart". Can I ask, in the context of these two cases, what you mean by that?

Baroness Ilora Finlay: What I mean is that the law sets a very clear line: we do not kill other people, and when people are suicidal we have a duty in our society to try to help and support them as people. Now sadly in our society there are about 5,000 suicides a year, every year, despite us having suicide prevention strategies. So the law gives a very clear message – you do not deliberately end another person's life.

But the way the law on assisted suicide [works] means that each case can be looked at on its merits, as to whether to prosecute.

The director of public prosecutions is able to look at it against two tests: first, is there evidence; and second, is it in the public interest to proceed with a prosecution? And one of the things I think that must come into that is [whether the] safety of the public is going to be served well by proceeding with a prosecution. That interpretation occurs over prosecution.

And then the courts as well, even when they deliver a verdict, can deliver a suspended sentence, and indeed that has been the trend that we've seen with assisted suicide, even when people have been found guilty.

AA: You are talking about the "public interest" defence, and the director of public prosecutions published his interim policy late last year [to provide guidance for those contemplating suicide as to whether their relatives or friends who help them die will be prosecuted]. Debbie, the reason that we got those guidelines was a lot to do with your own case.

Debbie Purdy: I think that the guidelines aren't sufficient to give a strong enough framework, or enough safeguards. But they're the best that can be done with the current law as it exists. Because our DPP does not have the power, neither should he, to change the law, and I think that is the problem.

What has happened in the last few weeks, in particular, shows us that there is a need for the British legal system to differentiate clearly between the malicious decision to end somebody's life and a compassionate caring assistance for somebody who has made an absolutely unequivocal decision that they want to end their life.

One of the things that I would say very strongly is that I agree that we need to make sure that alternatives are available.

But in my personal case, if I thought that prosecution was probable or possible, I would have taken my life early [while I could still physically do that]. I need the security of knowing that if I make a decision and I've explored alternatives; if I've looked at ways of improving the quality of my life, of maintaining my life in a way that is acceptable to me, and I can't find that, then I can ask somebody for help.

AA: Debbie, you're talking about your husband [Omar Puente]. You want clear guidance that he would be protected. Do you feel the guidelines [from the DPP] do not go far enough in giving you that protection?

DP: We haven't seen the final guidelines yet but I think there are some things that are not totally clear in the [interim] guidelines that the DPP has published. For instance, he says a prosecution would be more likely if somebody is going to benefit from the death of a person. Well, what about me? My husband and I own a house together. If I die, it becomes his. Is that considered a financial benefit or not?

AA: Can we turn to David here, because he has argued that people in your position, Debbie, who have these very clear feelings and desires, are in the minority, and that many people could be potentially vulnerable.

David Morris: I really share very much of what Debbie feels around choice and control as a disabled person. But [when it comes to legislating] what I don't want to see is this being placed in a context where some of our lives are of less value, in the eyes of the law and in the eyes of society, than others. And there's a whole depth of debate which we need to have, which is both ethical, but is also very practical.

Before we legislate for death we should be ensuring that we all, as disabled people, have access to these supports to be able to live effectively. Say last year, for various reasons, I was feeling suicidal but it was nothing to do with my impairment. I could have gone to Dignitas and nobody would have said anything about me being assisted to die, because I'm judged as somebody with an impairment which can be confused with somebody who is terminally ill. And we really need to establish that point.

Mary Warnock: I think it's terribly important to listen to what David and other disabled people say, and I'm sure that they quite often have reason to think that they're not treated fairly. It's rather like being terribly old. One feels that the medical profession tends to think it's not worth doing anything for her, because she's so aged, and so they might think it's not worth doing anything for David, because he's disabled.

But I think we shouldn't confuse that at all with the possibility of changing the law on assisted suicide in very specific cases. We must keep very clearly in mind what those people who campaign for changing the law on assisted suicide really have in mind, and it is people who are terminally ill. I mean, the clearest case of all is when their illness is progressive and has got much worse, and is going to get worse, and they wish not to get to the very end stage of that. It is nothing to do with disability whatsoever.

Neither of the cases last week, as far as I can understand, fall absolutely squarely into that category, but they are of great interest to those who want to change the law.

What happened, as far as I understand it, in the case of Lynn [Gilderdale] was that her mother reluctantly – reluctantly – acceded to her request to help her to die. She had attempted suicide unsuccessfully in the past, and her mother obviously knew her and knew that she had made up her mind. Her mother was brought to court [in the first instance] for assisting her daughter to commit suicide, and pleaded guilty. Then she was brought to court again for attempted murder, for which there's no mandatory life sentence. So the judge was given flexibility. But the thing that seems to be most important of all about this case is this: that it was the jury who, unanimously, and after a very short time, decided to find her not guilty. I think the fact that it was the jury is very important, because the jury represents ordinary people.

AA: Evan, one argument that people make is that there already are protections in the current law. Of more than 100 British people who have travelled to Dignitas [the Swiss assisted-suicide clinic] none of [their loved ones] have been prosecuted.

Evan Harris: There are people who do not want to go to Dignitas at the time that they are physically able to; who want to live as long as possible, but still want the option when they're terminally ill and suffering unbearably but mentally competent, to seek to die with dignity at a time of their own choosing. You've heard from Debbie: she wants the right to have help in this country at a time of her choosing, not be forced to go abroad perhaps earlier than she would otherwise go.

But I do want to pick up the point that David raised about the suggestion that those of us calling for a change in the law are in any way suggesting that the lives of disabled people are of less value. I happen to be very clear that the criteria [around which] I would wish to see a change in the law relates to terminally ill people – there is a medical diagnosis.

This is about giving people who are terminally ill the right to have their autonomy respected. Often people are infantilised when they're seriously ill and what they say doesn't count. What we're actually saying is that we will listen to the views of the competent terminally ill person.

AA: What kind of change in law are you looking for?

EH: Instead of the hotch-potch situation we have where the director of public prosecutions sort of gives an indication of who may or may not be prosecuted, I would like the law changed specifically to permit assisted suicide, subject to safeguards: including, very importantly, that there's mental competence; that there's no coercion; that someone is terminally ill; and that they're suffering.

IF: I think it's a fallacy to say that you can define when someone's terminally ill. I look after these patients; I've looked after many, many thousands of them. We have patients who people thought were terminally ill; the diagnosis has been wrong; the prognosis has been wrong. There have been other things that can be done and they are alive years later. Some of those had, at the time, been desperate to die and felt that really they had no future, and had spoken and asked about assisted suicide or euthanasia.

The other thing is that I would completely agree with David: that sadly we have a society in which people do have to fight for resources. And while you may say you personally don't concur with that view, there are value judgments made in the health service. We face financial stringency, and it is only too easy to look at rationing and say some lives are more worthwhile than others. And I think we have to be realistic about that. And you look at what happens in a society [where the law has changed]. In Oregon, in the 10 years since they changed their law, the number of assisted suicides has gone up fourfold. Something changes in society and the attitude of people changes: that actually ending your life is not only a so-called choice, but is an option that you ought to consider early.

Very often people are in complete despair at a time and say they think they would be better off dead, and that may last for a week or a month or so, but I've been struck by all of those who say afterwards, "I never believed I could have so much quality of life again; I never believed my days could be so rich". And it's only been when their problems and their anxieties and their fears have been addressed. But make no mistake: it costs money to do that properly.

DP: Can I make a comment? First of all, to say that the number of assisted deaths in Oregon has gone up fourfold, it sounds like there are so many of them. Last year fewer than 100 people utilised the law in assisted dying. Every year in the United Kingdom, people that are suffering from incurable illnesses, like multiple sclerosis, Parkinson's, motor neurone disease, they commit suicide because they're frightened of the future. If we have in place a framework where people speak to their doctors, and the doctors and social workers can look at ways of improving somebody's life, then that gives them protection…

If we don't like the fact that the Swiss law is available to British citizens, we need to talk about what is appropriate for the United Kingdom and design a law, work out a law, consider all the possible pitfalls that people are frightened of, and design a law that is appropriate in the 21st century for the citizens of this country. At the moment, we use Switzerland. We have them wash our dirty laundry, because we have nothing in this country.

If the DPP had not come up with clarification, I would probably have already gone to Switzerland or found a different way to die. But I'm certainly not ready to die.

DM: What we are dealing with is something that is very, very complex. The differentiation and definitions around terminal illness are very much about value judgments. If we are looking at a sensible law, we need to have the debate that Debbie has pointed to. If somebody feels they have to die years before they need to, because of fear of prosecution, then it's something that we need to tackle. But we don't need to tackle it by swift law changes. We need to look at [Oregon and the Netherlands] very seriously. We also need to look at the background and the historical context of the eugenics movement – I'm sure none of us around the table would support anything that people were talking about 100 years ago.

EH: I think that any mention of eugenics is a complete red herring because it implies a government programme against the wishes of people. What we are talking about is respecting people's views. What [about] the thousands of people who choose to die by refusing treatment? We respect the autonomy of someone to die when they're not terminally ill, when they're not suffering unbearably; we don't do a check for coercion. Their autonomy is respected there.

So if we were really concerned, as I think we should be, about making sure that people were given every chance to live, then there would be pressure to do something about that. But those who oppose us are not calling for that.

IF: The whole of palliative care is about trying to help people to make choices that are right for them, to enhance the quality of their life when they have it. That is hard work. The minute you start saying you can take shortcuts in care or you can leave people or give them the impression that things can't be done for them, then you drive them further into despair. What you're presenting them with is not about real choices in care, you're giving them a choice of either staying in despair or being dead. I don't think that is a choice.

EH: That's not for you to say; you're being paternalistic here.

IF: I'm not being paternalistic at all; I'm being realistic about shortcomings in clinical care.

MW: People may want to die for various reasons. Let's confine this to people who are either terminally ill or who have a long, long future of, let's say, total paralysis in front of them with no cure. Those people may genuinely want to die and I think there is such a thing as a wish to die and part of this wish to die may be the wish not to become a burden to our families. I think you can want to die for partly – not entirely, but partly – altruistic reasons, not to want to be in that position. And I just want that motive to be recognised as a respectable motive.

AA: Mary, do you believe there is a risk that the culture changes in such a way that people feel under more pressure if you change the law?

MW: I don't myself believe that, but there's no proof… no possibility of proof. We don't know because we can't foresee the future. I don't believe that those people who put up a spirited fight, as they always say, against their disease are going to diminish in number if the law is changed.

DP: The idea that somehow people are being encouraged to end their lives in Holland or Oregon… I think it's incredibly insulting to the people of those states and those countries.

MW: Absolutely, Debbie.

DP: It's not the case. The people who use assisted dying legislation, are they people who would otherwise have attempted suicide and possibly botched it, possibly ended up in a worse state, possibly succeeded?

IF: We have no idea whether they are the same or different, but the concern is whether you subtly change the attitude in society. I'm not talking about the individual people, but whether you get a change in society.

DP: Are you saying in Oregon they have a lower level [at which they] expect their loved ones to choose to die or something? Are you saying that the people of Oregon…

IF: I'm saying that when you look at the Oregon health reports, the numbers that are reported have gone up. That's a fact and you have to ask yourself why.

EH: I'm not in favour of legislation that opens the floodgates for unjustified cases of people who are either ­vulnerable or coerced, or for a change in the attitude that leads to that happening. What comes out of Holland in my view is clear evidence that since this was legalised and regulated, that involuntary euthanasia – essentially where doctors make a decision to bump up the amount of sedation so that it ends lives – reduces. And I think it's right that that should reduce because I don't want, in my case, doctors to make a decision for me.

IF: Those [sedation] figures are up for dispute.

DM: I feel sad when we sit here and it becomes an "us and them" situation, because there is so much of common concern. We're talking about rights and I'm concerned that if we were to have legislation that we legislate as strongly for the right to life as we legislate for the right to have a dignified death.

AA: Ilora, what do you say about the fact that so many people have been to Switzerland where they can end their lives?

IF: You're comparing over 5,000 suicides a year in the UK with just over 100 people who've gone to Switzerland [since 2003]. When you look at the people who've gone to Switzerland, a lot of them weren't terminally ill. The concern is, whose protection do we remove in pushing through something in legislation? We haven't really analysed the whole issue adequately to make sure that we don't have unintended consequences of removing safeguards from some people. We've got to get to that point in society where we have true equality of the value of life and then we move on.

MW: I wouldn't possibly disagree but it is absolutely hopeless to suppose that we're going to move to a place where the whole of society is prepared to help people to live, but then allows them to die if they want to. This, I think, is a very important thing to add because there's no doubt whatsoever that the financial constraints, especially on the health service, are absolutely terrible at the moment. And so doctors do make decisions to end people's lives, whether they want their lives ended or not.

AA: In what way? Can you give examples?

MW: Most people die in hospital, and in hospital it's very often a matter of a doctor's decision whether to attempt to resuscitate somebody if they have a heart attack or whether to make sure that they get enough to eat, which is something that many people probably die of in hospital – of malnutrition – because they can't feed themselves.

There are dozens of ways in which doctors do knowingly or otherwise make decisions that further treatment is futile – and that word, futile, I think, carries a great deal of weight.

EH: That's a passive case. But there's a difference between a decision not to resuscitate because it would be burdensome and/or futile… Despite what you see on the television, [only] a tiny number of resuscitations are successful in hospital, so it's reasonable for decisions to be made not to do something futile that is undignified.

That's entirely different from what is unlawful, but which does happen: where patients with a very bleak prognosis are helped on their way – and they're not conscious necessarily, but a decision's been made for them. Because doctors are human.

IF: That's a very serious allegation against geriatric and stroke services, Evan, and you really need to be able to substantiate that, because you're accusing them effectively of murder…

EH: I don't have a rose-tinted spectacled view of the medical profession because I've looked at the surveys and the published results of doctors being asked whether they have ever, and whether they have in the last year [hastened a death], and the results give very large numbers – much larger than the numbers of people who would use assisted suicide.

DM: But the point is that if we've got this situation already, [would] a change in the law change our culture to allow more people to do more of this?

EH: No, I don't think it does, because it respects autonomy; this is the point I'm making. I'm taking a wholly consistent approach where the autonomy of the competent individual – the patient – is always raised higher.

IF: I think that it is really important that when you have a discussion about autonomy, you also recognise the power of the clinician – the doctor – over the vulnerable patient and the power of the doctor to persuade them, however subtly, that actually they would be better off down one path or another. If you really want to have that discussion then have that discussion completely outside the medical context, so that you drive up the duty of the clinicians to talk to the patient and listen to them and their needs and do all they can to meet those needs.

EH: I think that's a very good point.

IF: Because you will not respect autonomy if you let the person in power over the patient also be involved in that decision.

DP: If we have an open and honest discussion so our relationships with our doctors become better and a framework is in place where palliative care can be offered and improved care can be offered, then it will improve those situations. I absolutely agree with David and everybody who said it shouldn't be rushed through. It isn't a political football: it's our lives and it's got to be discussed properly.

Switzerland is the only country that allows United Kingdom residents to make use of their law on assisted dying. Oregon doesn't, Belgium doesn't, Holland doesn't. So people with the financial ability and the intellectual desire to go to Switzerland make use of it. Other people can't and 5,000 people every year decide to end their lives. If only 100 of those people think they can delay it for six months or a year or two years or forever because they know that they can ask for help and support, maybe that will save lives.

I think maybe the idea that this is about a right to die is not true; it's about a right to live. About the right for our lives to be treated with respect, that it's our choice about how we live it; it's nobody else's. It's not a doctor, it's not a social worker and it's not the members of the House of Lords – they can't decide what determines the quality of my life; only I can do that.

AA: Ilora, can I ask you to respond to what Debbie just said, but also to this idea that people may [choose to] die before they would like to [because they have to be able to travel abroad to do it while they are physically able to].

IF: If you look at suicides that occur they are among people such as prisoners, they are among the bereaved, they are among young people who sadly get caught up, as the Bridgend young people did, in a suicide approach. These are not medically precipitated suicides.

DP: The rate of suicide among people who are diagnosed with MND and multiple sclerosis is a huge amount higher than the national average. People who are diagnosed with illnesses, particularly incurable [ones], are frightened of the future. They choose to take their lives [legally] because the fear of what the future holds.

IF: OK, and people are frightened as well, because, sadly, there's a lot of misinformation around. You can whip up fear in people. My point earlier on to Evan was precisely that if the doctor or the nurse who's the person in power gives a message of despair and actually reinforces the question "Would I be better off dead?" then you can drive somebody down the road to believing that they would be better off dead rather than saying what is it that's making today so awful; what can we do to improve it, however small?

DP: You're saying in all cases palliative care is a solution.

IF: Debbie, I'm not. I would never claim that palliative care has a magic wand and can make things magically better; it can't. People are suffering. Suffering seems to be part of the human existence, but what I'm saying is if we take away the duty of care within our society and if we take away the protection of the law from those who are vulnerable, we have to look at what the unintended consequences of that are.

MW: I think the suggestion that those who are in favour of changing the law on assisted suicide are taking away the duty of care is very misleading; I don't think that is the intention of people at all. It's not even an unintended consequence.

EH: I would just ask listeners and readers to consider whether if it was them and they were of sound mind and weren't being coerced and were terminally ill and were suffering unbearably, that they would think – as we know the majority of people do – that they should have the right, after consultation with doctors, after getting it checked with a second opinion, checked for coercion, that they should have the right to choose a death with dignity; it is their life.

IF: I want people to have choices – true choices – so they can live well and they can die well. Not that they feel that the only solution to the situation they find themselves in is to foreshorten their life and that we don't frame a law which drives us down that road.

DP: I don't believe doctors, carers, friends, family members would acquiesce quickly to a decision to end a life. I believe that people are searching for the best possible way to improve the quality of life. I think we need to discuss this really deeply, but we need to have an open mind and not be governed by the idea that any decision and any desire to create a law on assisted dying is automatically a failure. It isn't; it's a positive thing that gives us back our autonomy.

If you have concerns about suicide, call Samaritans on 08457 90 90 90 or contact www.samaritans.org and email jo@samaritans.org